EVIDENCE TO DECISION

The recommendation was however formulated based on user experience via CIICA. The benefit of evaluating the outcomes identified thus outweighs the harms of not evaluating the outcomes identified.

The systematic review did not identify any relevant evidence. As such, the recommendation is not developed with an evidence-based framework but informed through a consensus process involving previous guidelines and expert opinion from CIICA, the CI Task Force, and the co-chairs.

As the recommendation was developed predominately with feedback from a consensus process, it is very likely that the recommendation will not change if evidence becomes available.

It is not expected that adult cochlear implant users with severe, profound or moderate sloping to profound sensorineural hearing loss would object to the use of cochlear implant-specific quality of life as the most meaningful measure for evaluating the effectiveness of the implant in improving their lives. However, it is acknowledged that some cochlear implant users may have different priorities in terms of the outcomes they value, depending on their stage of life and individual circumstances.

Rationale

No studies were identified that met the inclusion criteria for research question eight. What is meaningful to cochlear implant users may differ based on their personal preferences and level of hearing loss. However, it is important to evaluate outcomes to compare various hearing loss interventions and communicate to newly diagnosed individuals the significance of cochlear implants in a way that resonates with them.

Cochlear implant users via CIICA were consulted and a consensus-based recommendation was developed. For cochlear implant users, the most important outcome was quality of life including emotional functioning/wellbeing.

Prospero Question

For adult cochlear implant users with severe, profound or moderate sloping to profound sensorineural hearing loss, what measurement tools and/or questionnaires (e.g. speech tests, quality of life questionnaires) should be utilised to measure patient outcomes?

• How and when should professionals use the measurement tools and/or questionnaires?

Consensus Recommendation 9

Two measurement tools should be used to evaluate the outcomes most meaningful when evaluating improvement post-implantation in adult cochlear implant users with severe, profound or moderate sloping to profound sensorineural hearing loss.

As such, audiologists if available in your country (or equivalent) should use:

• The Nijmegen Cochlear Implant Questionnaire (NCIQ)1 to evaluate hearing-specific quality of life in adult cochlear implant users with severe, profound, or moderate sloping to profound sensorineural hearing loss (please see Appendix 1 in the Technical Report for the full questionnaire).

• Validated speech perception instrument in the dominant language of the adult cochlear implant user by using words and/or sentences in quiet and noise.

The NCIQ and speech perception tests should be administered before cochlear implantation to establish an individual’s baseline and then again at least once 6–12 months after the cochlear implant is activated to measure personal progress.

Good Practice Statement 1

If resources allow, the NCIQ and speech perception tests could be administered 3, 6, and 12 months after cochlear implantation and re-evaluated annually after implantation.

Good Practice Statement 2

If a cochlear implant user expresses concern about their experience with their cochlear implant, the NCIQ and speech perception test could be re-administered.

Good Practice Statement 3

Before administering the NCIQ and speech perception tests, the purpose of these evaluations should be explained to the cochlear implant user and/or their family and friends.

Good Practice Statement 4

Speech perception tests should be in the cochlear implant user’s dominant language.

1. Hinderink JB, Krabbe PF, Van Den Broek P : Development and application of a health-related quality-of-life instrument for adults with cochlear implants: the Nijmegen cochlear implant questionnaire. Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck Surgery 2000;123(6):756-65

Good Practice Statement 5

Hearing health care specialists should prioritise using the data gathered to inform rehabilitation efforts, including monitoring device functioning and programming.

Good Practice Statement 6

If there is a decrease in a cochlear implant user’s outcomes, appropriate care and support should be prioritised. This may include revision of cochlear implant programming, monitoring device functioning, and rehabilitation efforts.

Good Practice Statement 7

The NCIQ and speech perception tests should be administered more frequently if there is a marked decrease in an individual’s score.

Evidence To Decision

The recommendation was developed through a consensus process involving a review of previously published guidelines and expert opinion from CIICA, the CI Task Force and co-chairs. A systematic review of the literature was used to validate and support the consensus recommendation.

As the recommendation was developed predominantly with feedback from a consensus process, it is likely that the recommendation with not change if evidence becomes available.

Rationale

Review of global guidelines and recommendations provides limited insight into which specific measurement tools and/or questionnaires should be used to measure outcomes that are meaningful to cochlear implant users. Research also highlights the mismatch between general quality of life questionnaires and the cochlear implant experience.

Nevertheless, the German Weißbuch guidelines1 outline a protocol for quality assurance in the field of cochlear implant care where the 60-item Nijmegen Cochlear Implant Questionnaire (NCIQ) is used to assess cochlear implant user outcomes.

The NCIQ was developed as a disease-specific measurement tool to assess both speech and quality of life for cochlear implant users. It has three domains (physical, social, and psychological) and six subdomains, including:

• Basic sound perception

• Advanced sound perception

• Speech production

• Self-esteem

• Activity

• Social interactions.

Cochlear implants are an effective medical treatment for many adults living with severe, profound, or moderate sloping to profound sensorineural hearing loss (SNHL). However, it is estimated that no more than 1 in 20 adults who could benefit from a cochlear implant have one.1,2 One of the main barriers to cochlear implantation is inadequate awareness of cochlear implants among primary and hearing healthcare providers, leading to under-identification of eligible candidates.1,2

The standard of care for adults with hearing loss should include treatments that best improve the individual’s quality of life through optimising hearing function, social participation, and engagement. For adults with severe, profound, or moderate sloping to profound SNHL, the standard of care includes an accurate diagnosis and timely referral to an appropriate specialist centre for assessment and counselling. When it is indicated as a potential treatment option, the patient should be advised by an appropriate healthcare professional about access to cochlear implantation and aftercare.

Developing a consistent approach to optimising the care for hearing impaired adults who may not receive adequate benefit from hearing aids is an important objective. In addition, the initiative will help raise awareness and better define referral and treatment pathways, so patients can receive information about a treatment option that may help them, at the right time. In many countries, adults do not have their hearing assessed as part of regular health check-ups. Of those who receive hearing checks and are diagnosed with severe, profound, or moderate sloping to profound SNHL, few are referred to an appropriately qualified hearing specialist to examine whether an implantable hearing device is indicated as the most beneficial treatment option.3